The Growth of an Evidence Based Perspective

My whole life I have been fascinated with science and medicine. For every free-choice project assigned to me from elementary to high school, I would base on anatomy or biology if I could. I may have not yet determined exactly how I would like to be a part of the medical field, but I know I am meant to participate in the world of healthcare for my career. Therefore, it was an easy decision whether or not this course would fit my interests. The title alone, “Literature, Medicine and Racism”, made me want to enroll immediately; it was a combination of words I myself have never yet put together. I was intrigued, and now that this course is nearing the end, I am beyond grateful that I have taken it. Upon looking back at how this course has shaped my growth, I have noticed that it has thoroughly opened my eyes to a vast world of medical history and literature I didn’t know existed prior. In turn, it has altered my previous, completely positive view of the medical field. I am now aware of many, but not all, of the horrors that people have endured in our history at the hands of scientists and doctors that have led to today’s medical and scientific knowledge. I once thought that the scientific progress I have learned about was built on ethical, positive events- a sharp contrast to the truth this course has taught me. I still view the medical field as something I am passionate about, but I no longer believe that it is built upon decades of positive advancements and events. The class text Medical Apartheid by Harriet A. Washington enabled me to learn many of these historical endeavors, and its factual content was highlighted by a fictional course text, Home, by Toni Morrison.

Upon my initial reading of Medical Apartheid, my jaw dropped and my heart sank, leaving me mortified and embarrassed to have wanted to be a health professional. The book revealed a plethora of unethical and inhumane experiments conducted on minority groups that were done to aid scientists in acquiring more medical knowledge. I wondered how I could have been so blind to all that lay beneath the research progressions and medical advancements of today. For example, the passage about how scientists went about studying the effects of radioactivity on the human body described in Medical Apartheid left me in shock. Washington explains one portion of the radioactive experiments as, “…the Fernald School in Waltham, Massachusetts, added radioactive oatmeal to the menus of thirty orphans…” (Washington, 233). When these orphans died, their bodies were autopsied to study the amount of radioactivity present and to see the damage that had been caused by it. Another portion of this text that shows an example of the medical field’s horrific past is the description of the Tuskegee Syphilis Study. At first, it appeared that the U.S. Public Health Service was trying to study and treat African American males with syphilis back in 1932 through this experiment. However, the truth behind the study is showed in Medical Apartheid as Washington quotes a PHS physician Dr. Murrell: “’Those that are treated are only half cured…. Perhaps here, in conjunction with tuberculosis, will be the end of the negro problem’” (Washington, 160). It can be seen that the study was not an act of aid, but an act of manipulation and unethical treatment rooted in racism. The core classes I have taken as a science major have turned a blind eye to its field’s negative background, such as these examples I have mentioned, and it has taken an English course to show me the truth behind the science material I learn.

When looking at the medical field at surface level, it appears to be overall successful and honest, saving people’s lives and curing many illnesses. When analyzing the overall mortality rate from all causes of death from the 1900s versus 2010, it has dropped by a staggering 54% (Tippett, 2014). Back in the 1900s, death caused by infectious diseases such as pneumonia and the flu were twelve times as likely compared to deaths reported in 2010 (Tippett, 2014). This shows great progression, but now that this course has shaped me into noticing more, I wonder, at what cost did this “success” come at? The phrase “behind every great success is a battle that has been fought” now means something entirely different to me than it did before this course. I realize now that the battle is no longer just the hard work those who experience the success go through; it may also entail the expense at which people’s lives were damaged, victimized, or manipulated to get them there.

This may seem like a purely dismal shift in perception about my once prized career goals, but in reality, the growth I have experienced has also taught me some positive things. Throughout my life and its experiences, I continuously told myself that you cannot have the good without the bad. Personally, I believe that they give meaning to one another. In this case, the horrific stories and events I have read about have shown me the gruesome side of the medical field, but they have also enlightened me to question aspects of my life I have previously taken at face value. It has shown me to dig deeper, and I am not completely discouraged from working in the medical field, but I must do my part now to prevent this terrible history from repeating. I am now aware of the many struggles and sufferings those in the past have endured to enable scientists to achieve the data they believed they needed. The scientific knowledge available today may be helpful, but as this course has shown me, a majority of it came from the exploitation of innocent patients in history.

As Washington states in Medical Apartheid, even some of the scientists themselves realized their faults eventually: “The radiation experiments capture the moment when an important group of physician-scientists ceased to view themselves as healers and benefactors first, with disastrous results for their victims and for American medicine” (Washington, 241). She goes on to state, “For African Americans, the full costs in lost health and lost trust are still being reckoned” (Washington, 241). This demonstrates that the doctors conducting these horrific experiments initially believed they were playing a positive role in people’s healthcare, and that they may have finally realized the truth of what their actions had caused. Not only was the medical world itself tainted with horrific means of experimentation, African Americans specifically were targeted and exploited through the healthcare system and as Washington stated, there are still consequences from that today.

In the text Home by Toni Morrison, one of the characters, Cee, finds herself at the hands of a doctor similar to those described in Medical Apartheid that performed serious damage to their patients. Cee worked for a man named Dr. Beau, and was led to believe that the experiments he performed on her would benefit his patients in the future. She becomes very ill due to complications from the procedures and examinations performed by him. Cee is eventually returned back home by her brother, and just in time, as she was on the verge of death. Once home, Cee recalls her experience with Dr. Beau when explaining to the women who heal her what had happened: “…how passionate he was about the value of the examinations; how she believed the blood and pain that followed was a menstrual problem- nothing made them change their minds about the medical industry” (Morrison, 122). This shows that not only did the women who helped her fear doctors, now Cee did too. She had almost lost her life due to a doctor being convinced that the procedures he performed on her would provide him with the knowledge he needed to help others. Not only did Cee almost die, she could no longer have children of her own, and this was something Cee struggled with greatly. Although these negative experiences and consequences Cee faced may be presented in a fictional text, they still highlight the reality of the medical world’s history. This fictional representation of the damages people faced at the hands of doctors they once trusted evoked just as much anger in me as the historical events presented in Medical Apartheid.

Not often do I stumble upon eye opening experiences such as this course. I find myself and the classes I take being very literal, which can push me into a more surface-level type of analysis. This course, in contrast, has helped mold me into being more thorough and to be skeptical of the information presented to me. I know ask “why?” and “how?” of all that I learn and read. This enables me to discover the underlying truths behind many of the facts presented to me that I would have never uncovered prior. Reflecting back on my growth I see that I now stray from my literal, face value ways. Although my once highly positive view of the medical field has dwindled, it is now an evidence based perspective. This shift from an evidence-lacking view on the medical field to a factually supported one has been shaped by the ideas this course has shown me. This class taught me the importance of evidence and justification. In this course, we referred to the text Reflective Writing by Kate Williams, Mary Wooliams, and Jane Spiro, when starting to form our final essays. It is stated in Reflective Writing that evidence needs to be provided in order to justify claims that one makes. Before reading this text, I hadn’t considered just how vital evidence is for all information presented, whether it is my own ideas or one I read in a science textbook. Not only has this class shown me directly that there is a vast, dark history behind the science advancements I learn about, it made me aware that I should be seeking the evidence behind these facts as it may help uncovering more of this history as well. As I look further into how an advancement in science or the medical field came about, I could discover on my own the root of the progress and whether or not it is a part of the dark history this course has shown me. This course has taught me how to actively uncover more of the history presented to me in texts like Medical Apartheid and Home on my own, and this has become the core of my growth as a student.

Throughout my studies, I could have been performing deeper analyses all along. A part of me is upset by this, knowing that the majority of my schooling has been presented to me in a sugar-coated way, speaking of only the great advances in science without the negative backstory ever surfacing. Although I may be angered, I cannot rewind the clock, so I will strive to do better in the future. I hope to take this eye-opening experience and practice it onward, noticing the truth behind the facts and read between the lines of my science textbooks. If I enter the medical field or teach of it in the future, I aspire to “practice what I preach”, and be honest about the history that precedes the medical and scientific knowledge we have today. This semester, and specifically this course, has helped shape me as a person and as a student with how I approach the scientific material I learn about.

E. coli and its Connotations

Earlier this semester, our class had a Skype conversation with Professor Ben Chapman after we listened to a podcast called “Food Safety Talk 163: Grown on Chia Pets” by him and Don Schaffner. Chapman and Schaffner spoke about food safety in their podcast, and they discussed their research regarding it. In our Skype conversation, Chapman went into further detail about an event that occurred during one of his research studies on food safety. There was an incident where during a deception study, one of his research participants became highly upset when they discovered they were not disclosed the full truth about the experiment. The study involved a biological marker on raw chicken, and in this case, it was nonpathogenic E. coli. The experiment was done as a deception study in order to obtain accurate, unbiased data regarding whether or not people wash their chicken before cooking it. The biological marker was utilized to see the projected spread of bacteria on chicken when people are preparing it. The nonpathogenic E. coli was mentioned in the consent form given to participants in the study, and it was referred to as “biological tracer organism” (Chapman and Schaffner, 2018). The participant was unhappy to discover later on that this biological tracer organism was E. coli.  They felt as though they were lied to about what the study entailed, and believed to have been put at risk of contracting something harmful.

I personally could understand why someone would get upset or feel scared when finding out they had been exposed to E. coli. The bacteria E. coli is normally presented to people as harmful. This is true, but only to an extent. There are different strains of E. coli, and some are indeed, safe and nonpathogenic. I myself have done many experiments with E. coli in biology labs, therefore I personally wouldn’t even think twice about being at risk if I was told I came into contact with E. coli. However, I fully understand why someone without the same experiences as me with this bacterium would be scared upon finding out they were exposed to it. This whole situation told to us by Chapman really made me realize how important it is for consent forms to present information as clearly and thoroughly as possible. It also made me think, was I ever presented with full disclosure of the risks behind the E. coli that I did experiments with?

As I thought back to the times where I worked with E. coli, I realized that I was in fact not thoroughly told what risks working with the bacteria posed. I also thought about how I performed experiments with E. coli even back in high school, where one might think a description of the bacteria we were using would be sent home to parents to ensure them that it was safe. Our parents were never notified, and no consent forms or descriptions of the E. coli strain we were using was ever presented to us. I was told the bacteria wasn’t harmful, but I wasn’t given any proof, nor was there any elaboration. Upon thinking back to this situation, I can understand even more as to why someone who may not have a background in science as I do would be concerned when they hear they came into contact with E. coli. Chapman stated that he understood the participant’s concerns as well, and that is why he strove to make changes in the wording and explanation in the consent form to prevent another situation like this from happening again in the future (Chapman and Schaffner, 2018).

Overall, learning about this research situation and the misunderstanding of E. coli made me notice that I myself went through a similar event, but I had a different reaction. I realized that the difference in my reaction to that of Chapman’s research participant is that our backgrounds with the terminology differed. It made me understand just how important the wording and explanation of the terminology used when presenting someone with a description of what they are going to experience is. I may have been presented with a lack of information just as the research participant was, but luckily, I had a better experience due to my understanding of E. coli. This pushes me to never assume what others may already know or not know, and that I will always be sure to fully explain everything I present to someone if I am to do research myself one day.

The Importance of Justifying Claims

In every science class I have ever taken, I immediately believed all of the information being taught to me was accurate. Not once did I ever step back and consider where the proof was for these facts. I trusted my educators, the textbooks, and all the class material presented to be correct. Then, in this course, we discussed that a major component of our self-reflective essay was to provide evidence behind the claims we made. When I first heard this, I was confused, as I never considered the need to provide textual support for my own beliefs when writing about a personal experience. I originally thought that my self-reflective essay would be entirely composed of my own feelings and thoughts. After discussing in class why we need to support our claims, I now see the importance behind providing evidence for my own thoughts and feelings. Without proof, all of my claims about how I grew throughout this semester would be weak, and hold no true value. As stated in Reflective Writing by Kate Williams, Mary Wooliams, and Jane Spiro, evidence needs to be provided in order to justify claims that one makes (Williams, Wooliams, Spiro, 2012). Now, I question why have I overlooked the importance of evidence in not only the science classes I take, but my own claims as well?

I decided to research why I may trust information right away, or not until I’m provided with evidence. The article “Why We Believe Alternative Facts” by Kristen Weir goes into detail about human judgment and why people are more likely to believe some things over others. Weir explains that humans determine what they believe based on a biased set of cognitive processes (Weir, 2017). This means that people are predisposed to trust the information that they do based on an already established thinking process. Weir quotes Dr. Ditto, a psychologist at the University of California, “’People are capable of being thoughtful and rational, but our wishes, hopes, fears and motivations often tip the scales to make us more likely to accept something as true if it supports what we want to believe’” (Weir, 2017). This shows that I may overlook the need for evidence if the information presented to me is something that already aligns with what I want to believe is true. In regard to my self-reflective essay, this may explain why I was confused at first about the need to provide evidence for my feelings and thoughts. If I am more likely to trust information without proof when it aligns with my beliefs, then it makes sense as to why I never considered justifying my own claims; my personal thoughts would parallel with what I already believe. I also see this correlation with my science courses as I am passionate about the field, and therefore, I would want to believe everything regarding science is true.

In the article by Weir, she goes on to state that, “Much of the early research on motivated reasoning showed that people weigh facts differently when those facts are personally threatening” (Weir, 2017). When I first read this, it became even clearer as to why I don’t seek evidence for claims made in my science classes or my own personal statements. For me, my core beliefs are rooted in science, therefore I would not find any portion of my science textbooks or lectures personally threatening. Then, Weir quotes Dr. Ditto stating, “’It takes more information to make you believe something you don’t want to believe than something you do’” (Weir, 2017). Once again, I see the connection between my lack of evidence seeking with the reasoning provided by Dr. Ditto and Weir. I am more likely to trust information presented to me by STEM educators and texts than others, due to its role in my established beliefs. If I was given information that contradicted what I already believed, then I would be more prone to seek the justification behind these claims. When it comes to my own personal statements or the material I come across in my science courses, all of this information is what I want to believe, as I have trusted it my whole life. Therefore, I do not readily seek the need to find more information regarding why it is accurate; I trust the material instantly.

Now that I am aware of my biased set of cognitive processes, I can actively seek to change it. In the future, I hope to no longer overlook the importance of evidence behind the information presented to me, regardless of its origin. I hope to no longer gloss over the lack of justification behind the material I am shown or that I state myself. With a more active mindset and critical processing of information I come across, I hope to progress in not only my understanding of concepts themselves, but the vindication behind them. I urge my readers to do the same, as we may all benefit from demanding evidence for the facts given to us.

Taking a Step Outside Your Skillset

This course has continuously shown me the importance of class discussions and of a liberal arts college. For instance, today in class we discussed with our groups our reflective essay ideas. Through this, I learned that one of my group members was also a science major. We talked about how in order to apply for medical school, you need to complete a full year of English. Another group member asked us if it was also a requirement for our majors. When we informed that group member that it wasn’t, they asked us whether or not we thought a full year of English should be a requirement for science majors. This wasn’t something I have considered prior. Since I entered SUNY Geneseo through a pre-med track, I was always knew that a year of English was a requirement, but their question as to what I believed to be a part of my own major’s requirement caused me to wonder, what do I think should be a part of it?

Together, my group discussed further about courses such as humanities, sociology, and English that a majority of students at SUNY Geneseo are required to take. We talked about how they have all aided in our personal growth as students. However, if I had not taken these courses, I believe my educational experience and growth would be different. These classes exposed me to the humanities and parts of our history that none of my core classes for science would have done. Therefore, I feel that a year of English would be beneficial for all majors, including science majors, regardless if they plan to enter medical school or not. There is a wide variety of English courses offered at Geneseo, and they could all further a student’s educational growth. An article by Valerie Strauss references George Anders book, You Can Do Anything: The Surprising Power of a ‘Useless’ Liberal Arts Education, and highlights the essential claims that he makes about the benefits of taking classes outside of one’s major or skillset. Strauss quotes Anders, “The more we automate the routine stuff…the more we get tangled up in the vastness and blind spots of big data, the more essential it is to bring human judgment into the junctions of our digital lives” (Anders, 2017). This shows that classes outside our core requirements are what shape our humanity and help us step back from all the science and data. Personally, the numbers I see all day in STEM classes can be consuming, but when I step back and learn in courses such as English or humanities, I am exposed to concepts of culture and humanity. Our group discussion then caused me to consider the classes that I am currently taking or have completed in the humanities/literature field and how they shaped my learning.

I have completed almost all of my general education requirements for my undergraduate degree, with each of them showing me a new aspect of culture or humanity. However, the only English portion of my general education classes was a semester of an introductory freshman writing course. That introductory course class was helpful, but it simply was not enough. There was a lack of exposure to the humanities through literature. Thus, I believe a full year of an English course would be beneficial to all majors. As Anders said, we often get caught up in numbers and the digital aspect of our world and that we can lose our touch with humanity. Therefore, with a year of English as a requirement in the general education portion of our degrees, it would be beneficial to our growth as students. Strauss also mentions in her article, “Within the humanities, one can learn another language, which can open the window into a new culture, a new worldview” (Strauss, 2017). Although English courses may not be labeled as humanities, it’s a close parallel. According to Stanford University, humanities can be defined as, “…the study of how people process and document the human experience” (Stanford University). English courses highlight human experience through literature, and within in these classes, it’s analyzed. Overall, a full year of English could provide students with even more exposure to the humanities. 

This course has not only opened my eyes to so many new aspects of literature, but it has also shown me just how important collaboration and my experience at a liberal arts college is. I am thankful for discussions like the one I have mentioned, and I hope to encounter more like them in my further studies. The idea of English being a two-semester requirement versus just one appears to be a beneficial proposal. As stated before, this could increase students’ exposure to the humanities, as I have experienced within my own English classes. Even in our syllabus for this class by Dr. McCoy, the course epigraph is by Dione Brand and it states, “My job is to notice…and to notice that you can notice.” A part of this job of noticing is studying humanity, and English courses expose us to this. 

Utilizing Perception

As the semester comes to an end, and as I have began to practice self reflection, one reoccurring concept I have discovered to have been helpful in my growth within this course is perception. In practically every text, article, and discussion in this class, I have analyzed some form of perception. Perception may seem to be a minuscule aspect to conversation and literature, but it has been very prevalent in my studies so far. It can often be overlooked, but in my mind, it has been very prominent upon my analysis of our course texts. In particular, I found the aspect of perception to be vital in my understanding of Zulus by Percival Everett. In this reading, the main character, Alice Achitophel, goes through a peculiar transformation and refers to herself being present in two different forms. Without thorough unpacking of her perception and the perception I held as a reader, I would have found myself utterly confused.

In the text Zulus, the setting is set in the future after a thermonuclear war has occurred. The government controls everyone’s food, handing out rations of cheese, making it the only food source for those placed in this futuristic world. The government also controls the population from growing by sterilizing all of the women. However, Alice did not attend to her sterilization appointment as she was supposed to, and she becomes pregnant. Outside the city and government control, there is a secret village where rebels live. Alice’s coworker, Theodore Theodore, is good friends with these rebels, and offers to take her to them upon finding out she is pregnant. Alice Achitophel goes with him, and gives birth in a strange manner- the child is a grown woman. This woman is told through the text to be Alice herself, as though the birth was a form of transformation. Even Alice herself is confused, but she is sure that she is still herself, just in the new body. She also states that the remaining form of her old self that gave birth is another living form of her. When conversing with a character after Alice’s transformation who knew the “original” Alice that gave birth, the new Alice states, “’It’s me, Alice, Alice Achitophel’…telling herself as much as she was him, feeling the voice different in her throat…” (Everett, 112). From a reader’s perspective, I found this very confusing at first and couldn’t wrap my head around the concept of a birth like this one. In the text it is shown that Alice’s original form coexists with her new form as it is stated, “She could see every step of theirs, every stare and reaction, her brain lying sleepy in her cranium on the ground. Her head was just a human head…by which people walked without glance nor notice” (Everett, 140). Here, the original form of Alice Achitophel is described, and is presented as though she is still alive, and is still at the rebel camp. Upon expanding my analysis of this perspective Alice’s new self holds, I was able to ponder the possible presence of a metaphor. Could this “new self” Alice has birthed represent that she is trapped? Is Alice’s new self meant to be presented as alongside the readers looking in at this “trapped” old Alice?

When taken in a literal sense, it may be interpreted from the text that Alice truly gave birth to herself and is existing as two forms. However, this can be confusing as it is not something we might consider possible in reality. To further unpack, the analysis of this character’s perspective and view presented in the text can open more doors of interpretation, leading to possible underlying meanings or metaphors. Another aspect of the plot that encourages me to further push the possibility that Alice’s new self shares the same perspective as the readers is the fact that Alice’s old self is encased in a glass box. The head of the original Alice is trapped in this case. In the text it is stated as, “She was in a case, a cube, transparent glass on at least three sides, the view for her distorted at the corners, bending forms which stood at her sides, if a disembodied head could have sides…” (Everett, 183). I question, is Everett demonstrating the trapped state of Alice through a parallel of the new Alice’s perception to that of those outside the novel? Could the new version of Alice be herself stepping back and reading the situation from an outside point of view the way those who read the text view it? Through the analysis of Alice’s possible perceptions, I myself perceive a metaphor may be being drawn through this demonstration in the text.

In this course, we are continually unpacking, analyzing, and digging deeper through the possible meanings being brought about by the texts we read. The book Zulus was a particularly challenging text to grasp and comprehend, and I wonder if my focus on perception enabled me to unlock a hidden metaphor. In this course, we discussed the possibility of Everett demonstrating that Alice Achitophel is physically trapped in the novel, which added to my questioning of there being a similar metaphor present. I wonder if Alice is trapped not physically in the book, but metaphorically, as the possibility of her new self being an outside perspective prevails in my thoughts. I hope others reading this question underlying meanings and metaphors through the concept of perception as I did.

Zombies and Stigmas: a Possible Correlation

Throughout history, a stigma associated with mental illness has occurred, and over time, evolved. Back in the Neolithic age it was believed to be caused by evil spirits and today, where it is more accepted medically, it still has a stigma due to a lack of understanding from some (Caddell, 2019). There are two divisions of the stigma, one coming from an outside perspective and the other being internal or self-perceived (Caddell, 2019). In this post, I am focusing on the external stigma generated by those who have prejudiced attitudes towards mental illness. This division of the stigma generates discrimination for those who experience mental disorders. In the article introduced to me by this course, “Up To 7,000 Bodies Found Buried Beneath University Of Mississippi Medical Center,” by Nina Golgowski, it is discussed that many of the patients at the Mississippi State Lunatic Asylum were buried after their passing without their loved ones being informed. The asylum was closed around eighty years ago, and the remains of those who were buried there was first discovered back in 2012. Now, the University of Mississippi Medical Center rests upon this grave site. A proposed excavation project would involve the uncovering and re-burial of those found in the mass grave site, and possibly using their DNA for identification. These patients were buried without record and without labeling, which can be seen as dehumanizing them. This poses a similar circumstance to the treatment of the zombies in our course reading of Colson Whitehead’s Zone One.

In the text Zone One, an apocalypse has taken place as a plague that has ran ramped. The plague turns humans into zombies, or in this text, they are referred to as skels. The skels are described as deteriorated, mindless, lifeless creatures. Mark Spitz, the main character who is not infected, explains the state of the skels he comes across stating, “After all this time, they were a thin membrane of meat stretched over bone…Two of them had lost their high heels at some point during the long years of bumping around the room looking for an exit” (Whitehead, 16). Through this description, it can be seen that uninfected humans in the text that encounter skels see them no longer as equals, but as a separate species of sorts. To those in Zone One who are unaffected by the plague, the skels do not register in their minds as human beings due to their physical changes brought on by the disease. This view on the skels and the brutal force put upon them to wipe them out completely, demonstrates how those taken over by the plague are being dehumanized. The skels are shown to be separated out from the rest of humanity, and when they are killed, no one takes the time to learn, let alone search, for their names or identification. As stated in the text, “He didn’t bother with names. No one cared about the names, not them, not the higher ups” (Octavia Butler, 62). This then prevents the possibility of trying to inform possible survivors of their loved ones if thy are found to be skels. In this case, the zombies are dehumanized, and the matter through which their bodies are handled after their death furthers this. At one point, the sweepers, those who go through buildings and areas to clear out remaining skels, throw the dead bodies of the zombies out of the building windows. As the sweepers go through the building, it is described, “For the first few weeks they tossed the bodies out the windows. It was efficient…It saved time and energy” (Whitehead, 74). By doing so, even Mark Spitz, a sweeper, recognized this dehumanization of the skels when the disposal team, who had to clean up the body bags discarded through the windows, spoke up about it needing to end. This is seen as it is stated, “It was disrespectful…Mark Spitz concealed that Disposal had a point” (Whitehead, 75). This example of dehumanization can possibly be related to the article by Nina Golgowski, “Up To 7,000 Bodies Found Buried Beneath University Of Mississippi Medical Center,” as those who passed away at this asylum were treated in a similar way.

At the Mississippi State Lunatic Asylum, many patients died and were then buried in mass graves in the land surrounding the asylum without their families ever being informed. This act of mass burial dehumanizes the patients not only through the style of burial, but also as their mental conditions could have been stigmatized by those who buried them, as they in turn, did not take ethical measures regarding their deaths. Today, a woman named Karen Clark discovered that a relative of hers passed away in the asylum and is therefore believed to be buried somewhere beneath its grounds. Her relative, Isham Earnest, fought in the War of 1812, and in the asylum, was ruled “insane”. It can then possibly be proposed that those with mental illnesses were seen as separate from those without mental illnesses, as a patient in a hospital for any other condition would of course had its family members notified of their passing. The director of UMMC’s Center for Bioethics and Medical Humanities, Ralph Didlake, states, “There’s a historical stigma associated with mental illness, and that’s very true historically, but this is an opportunity for us to deconstruct that stigma by studying that experience” (Golgowski, 2017). He insinuates that those in the mental asylum had stigmas against them, which then could have possibly lead to the dehumanization of them and their burials. With this in mind, the dehumanization of those with mental illnesses can possibly be compared to the dehumanization of the skels in Zone One. The carelessness applied to the skels after they are killed by the sweepers may be similar to the mistreatment of the patients in the asylum who were buried without record and proper notification of family members. An entire medical university was even built upon the grounds of the old asylum, insinuating little knowledge regarding this mass grave site.

Overall, it can be seen that in both cases, that of the asylum patients and the skels of Zone One, a group of individuals were seen to be dehumanized through their treatment by others upon their passing. In the case of burial, various cultures and ideals practice different burial styles, but generally, the concept of a mass burial without record and identification can be seen as disrespectful. Through this analyzation of the skels in Zone One and the patients of Mississippi State Lunatic Asylum, I question if a there is possible connection between the two. I wonder if there is a close parallel between Zone One and the stigma of mental illness through the representation of the skels. Is Colson Whitehead trying to draw my attention to those in my society who are dehumanized based on stigmas? I encourage my readers to ponder this thought as well.

Epidemics in Reality and Fictionally

By definition, an epidemic as a noun is “an outbreak of disease that spreads quickly and affects many individuals at the same time : an outbreak of epidemic disease” (Merriam-Webster). As an adjective, the word renders a different meaning, focusing on the aspect widespread growth. In this case, when referring to an epidemic, I am using it in its noun form; an event of disease outbreak that has occurred or is to take place. Building off of my last post, I aim to connect a real-life epidemic that has occurred to the hypothetical questions I had posed. In 2014, an Ebola epidemic broke out rapidly in Africa, labelled as the West African Epidemic (CDC, 2019). Within this epidemic, there were instances where infected individuals who were not kept in isolation had traveled elsewhere, risking further spread of the epidemic. In this way, this specific epidemic corresponds to my questioning of the parts to a whole in an epidemic, as seen in Clay’s Ark by Octavia Butler.

When the West African Epidemic occurred in 2014, an infected person from Guinea traveled to Mali, spreading the illness (CDC, 2019). Luckily, the virus was mostly contained, with only 8 reported cases and 6 deaths (CDC, 2019). The only way this potential further spreading of the epidemic was maintained was through the isolation and close monitoring of infected persons in Mali. Had the individuals been released and had traveled as did the original infector, the epidemic would have taken over more countries. In this instance, the removal of those persons’ freedoms in order to contain the illness may be seen as beneficiary to the whole. For the persons themselves, remaining in isolation waiting upon their possible death, may have been torturous. Similarly to those in Clay’s Ark, those who were originally infected and demanded isolation upon themselves with contained spreading of the disease, could be possibly seen as partially analogous to the CDC. In the text, Meda, who is one of those who started the enclave explains to Blake, a newly infected individual, “If you escaped now and managed to reach other people, you’d eventually give them the disease. You’d spread it to everyone you could reach…” (Butler, 489). In this sense, those who originally formed the enclave want to overall contain the disease to a certain area to prevent an epidemic.

Then, on the other hand, those newly infected by the enclave who demanded freedom, such as Blake, could be seen as those who traveled while infected. Although , I must point out, those who traveled may have not had malicious intent as they most likely were unaware that they even carried the infection. However, they still practiced freedom while infected with the illness, and that is where my connection between the two lays. The characters newly infected in Clay’s Ark were also compelled to experience freedom as they were in denial that they were truly infected before their symptoms started. Blake’s daughter, Rane, tells an enclave member, “…Isn’t it time to break the chain? You and I could get away together. We could get help,” and he answered, “…We’re infectious for as much as two weeks before we start to show symptoms…” (Butler, 535). In this sense, a parallel can be drawn between those who traveled without knowing they were infected with Ebola and characters of Clay’s Ark who wished to escape as they did not think they were infected either.

As this post bounces off a previous post of mine, I further the investigation between today’s epidemics and that of which was presented in our course reading of Clay’s Ark. The sacrifice of freedom done so by those infected with Ebola during the time of outbreak is what enabled the illness to be contained and for the epidemic to cease its spread. In this real-life case, it can be seen that the isolation of few was deemed necessary to benefit the greater good, by stopping the risk of infection. Stemming off of my previous post, I deepen the questions I posed by asking readers to now consider this present-day scenario with that to the fictional proposition of an epidemic in Clay’s Ark.

Personally, my perception of the comparison between sacrifice of individuals’ freedoms for the protection of the greater good has became clearer with the analysis of an epidemic in reality that affected our world. Upon my reading of our class’ text Clay’s Ark, I went back and forth between where to place my sympathy. It oscillated between sympathizing for those trying to escape and obtain their previous freedom and my understanding of those who started the enclave wanting to contain the organism. A portion of me felt for the escapees as they struggled with their forced isolation. However, at the same time, in the back of my mind I felt for those trying to save the greater whole, regardless of the freedoms being sacrificed by the individuals. By analyzing this epidemic case of Ebola in 2014, I find that I myself sympathizes more with those trying to isolate individuals to protect the rest of the population. I wonder if this does the same for those who read this in the sense of a change in perspective or solidification of a view already conceived.

Parts to a Whole

When one hears the word epidemic, highly negative connotations arise. Words like fear, widespread, and contagion surface in our minds. These connotations primarily reference the group affected, or soon to be affected, rather than specific individuals facing the illness. An epidemic makes us question the whole and how it will suffer. We do not normally consider the individuals’ losses as they become just a small part of the equation. However, it takes just one individual, one part of the epidemic, to spread the illness exponentially, so how does one not focus on the selective parts of this whole? What happens when we analyze the specific people that are a part of an epidemic?

In the text, Clay’s Ark, by Octavia E. Butler, it is seen that a group of individuals who have ventured out to space had contracted an extraterrestrial disease through the form of a parasitic organism. The symptoms that arose from being infected with the organism drove the individuals who survived to return back to Earth in order to infect others (Butler, 457). Only one infected person survived the attempted crash of the ship, and despite the horrific landing, the organism drove him to survive in ways not humanly possible. This one individual comes into contact with an isolated group of individuals and in turn, they all become infected. The epidemic begins, and with the amount of humanity remaining in those infected, they devise a plan to keep themselves contained. However, even with keeping themselves isolated, they still give in to the organism’s ability to drive them to infect others. They conduct this process in a controlled way, infecting a few individuals at a time to keep reproduction occurring. Those newly infected struggle with the reality of having to remain isolated and a part of the group that spread the disease to them. Before the organism took full reign on the freshly affected individuals, they attempt escape, risking the spread of the illness, but driven to protect their desire to be free.

Upon this situation and plot of the text, I question the difference in emphasis on the individuals’ a part of the whole versus the whole itself. What value should be held to a higher standard? The individuals’ drive for freedom while risking the inevitable spread of an epidemic or the containment of those infected in order to protect the whole? In either instance, something must be sacrificed, and both question morality. One may consider it more ethical for those infected to force themselves into isolation, even if it means suffering from the side effects of the illness and giving up their freedom. In this case, the disease would not spread without external forces as those infected would refrain from any contact with the outside world and eventually pass away. At that point, once they all are deceased, it would be assumed that the disease dies with them, ending any chance of a full-blown epidemic. However, this style of life may come across as meaningless to some, as those isolating themselves sacrifice their freedom to leave isolation and any chance of experiencing the rest of the world. On the other hand, if those infected practice their freedoms and leave their isolated premise, an epidemic is guaranteed to occur, resulting in the harm of many. In this case, those with the disease do not personally face any restrictions as they go about their normal lives, that is, as normal as it can possibly be while being infected. Upon this freedom, they put a much larger whole at risk. This situation does not only apply to this text where a group is infected with an extraterrestrial disease, it can also be relevant in today’s world.

In terms of the medical field, this questioning of personal gain versus protecting the whole can be applied to many of the experiments we have read in our course through the text Medical Apartheid by Harriet A. Washington. Throughout the book, researchers take away individuals’ freedom and consent through unethical experimentation to obtain data they believe may help a greater whole.  In one experiment, doctors injected a man who they presumed to not make it through the night with plutonium (Washington, 216). They did so without consent, and they hoped to soon autopsy him after the injection in order to learn more about the radioactive substance’s effect on the human body. The man survived, and escaped the hospital upon learning what the doctors had done. His freedom was stripped for the rest of his life as the radioactive substance would never leave his system. To this day, experimentation like this exists, where the individual’s freedom is sacrificed in the belief that it will benefit the greater good. The question posed earlier instills, and I ask you readers, where must sacrifice be made, and how does one overlook the individual’s role in an epidemic?

Humanity’s Vital Role in Informed Consent

Written by Kaysen Bickel, Andrianna DeHart, Noah Lieberman, Julia Ophals, and Ariana Vidal

In Medical Apartheid by Harriet Washington, she states that informed consent is “…not a signed piece of paper, but rather the fluid and continuous process by which research informs the subject detail of what he or she proposes to do, why it is being proposed, and what possible consequences the experiment carries” (Washington, 55). Washington further explains that with informed consent, as the study proceeds with alterations, the researcher must allow the subject to withdraw from the experiment at any point (Washington, 55). By this definition, our understanding for what constitutes informed consent can begin to form. However, the nature and importance of informed consent may only be obtained after understanding what it is not. In Octavia Butler’s Clay’s Ark, consent is never directly defined, yet she outlines many experiences where it is lacking and presents itself in a format comparable to a deception study.

The definition of informed consent derived from Washington applies to those who possess humanity. Once humanity is removed, consent no longer exists. Within Medical Apartheid, researchers whose main goal is to obtain data lose sight of their subjects as humans and view them merely as a statistic. For instance, in 1932, a large group of African American males were utilized as an ongoing statistic in the Tuskegee Syphilis Study by the U.S. Public Health Service (Washington, 157). These males were denied informed consent by the PHS as they were deceived from the beginning to the end of the study (Washington, 157). At this time in Alabama, it was promised that those who were ill and tested positive for “bad blood” (CDC) would receive free healthcare. The term “bad blood” had no true definition, as it could entail testing positive for anemia, syphilis, or a number of other illnesses. The group that had “bad blood” were studied together, allowing those with syphilis to be in contact with those who merely had anemia. The men believed that they all shared an illness, being unaware of the risk of infection. Not only were they misled in the beginning with their false diagnoses, they were also never treated. The men with syphilis continued getting worse, and those who did not have it, contracted it. Meanwhile, outside of the study, penicillin was determined to be the leading treatment for syphilis, and these infected men were never to receive it. 

Not only were these men unable to leave the study and seek actual treatment, the subjects were never informed of this being a study to begin with. Believing that they were simply being helped, the men would not have known to seek treatment elsewhere, enabling the researchers to contain their subjects. Overall, the men did not know they were participants in a study, were at risk for infection of syphilis, and were not being properly treated. At no point was informed consent present, therefore no permission could have been given. Even after the men in the study died, their bodies were autopsied to see the progression of syphilis. They were consistently deceived throughout the experiment and into their deaths with no means of escape, serving solely as a statistic for PHS researchers. As the experimenters were driven by their mere need for data, all humanity dissipated, and informed consent could never surface. 

A similar narrative is seen in Clay’s Ark, where the characters battle with consent and whether or not it can be given when aspects of their humanity are lost. The infection the characters contract diminishes their human characteristics. As explained in the text, “The disease doesn’t go away. It just settles in and stays with you and you pass it on to strangers and to your children” (Butler, 525). The disease kept them from controlling parts of themselves after infection. It came from a different planet which resulted in inhuman symptoms. From the perspective of an infected character, Butler writes, “We’ve lost part of our humanity. We can lose more without even realizing it” (Butler, 543). As a result, they display animalistic tendencies and their children seem to almost become animals all together. The book emphasizes these characteristics stating, “The baby, when it came, looked like a gray, hairless monkey,” (Butler, 585). These traits further the idea that humanity is lacking, meaning consent is lacking as well. The book characters attempt to contain the diseased in their enclave, however, they constantly fear and plan for the incident of its spread into an epidemic, fearing that all humanity would be lost (Butler, 583). The infected were unable to give their consent and were left with only the choice to live or die. While they seem to have this choice Butler notes, “You think you can choose your realities. You can’t” (Butler, 522). The lack of options available to Butler’s characters is similar to that of those in the syphilis experiment in Medical Apartheid. The participants were unable to choose their realities as they were misinformed throughout the process of the study with regard to their diagnosis, treatment, and overall role in the experiment. To give the patients a fair choice and treat them humanely informed consent must be provided and the patients should be able to retract it at any time. 

Washington states, “research is an utterly essential and desirable component of treatment, but its subjects must be aware that they are participating, must be informed, must consent, and must be allowed to weigh the possible risks and benefits” (Washington, 7). A deception study, classified as research is where participants are deceived in order to obtain unbiased information. Therefore, the full knowledge of the study required to give informed consent is revealed only after the experiment has been conducted. Due to this, true informed consent cannot exist in this type of study. How can someone back out when the damage is already done? In Washington’s Medical Apartheid, the scientists at the time were using human test subjects to observe the effects of radioactivity on the body. Washington recounts the story of a man named Cade who arrived at the hospital with severe injuries, and doctors did not think he would make it through the night. With this in mind, they injected plutonium into Cade WITHOUT his consent in hopes to study its effects on his deceased body. Plutonium is described as a “fiendishly toxic, man-made element [that] is medically devastating because it causes cancerous changes in bodily tissues by ejecting high-energy alpha particles from its nuclei” (Washington, 444). This case and many similar to it, can be associated with the Tuskegee Syphilis Study. In these cases, patients thought their doctors were treating them and caring for them when in reality they were deceiving them as they conducted research without their knowledge. In these cases, the effects of the research could not be reversed, which killed many people. The participants in these studies could not withdraw themselves because they did not know they were being experimented on. As Washington states that for informed consent, the researcher must allow the participant to withdraw at any point, and in both of these cases that was not possible (Washington, 55). 

A similar theme runs rampant through Butler’s Clay’s Ark, much like the virus; once transmitted, there is no turning back. The characters of Clay’s Ark, Blake and his daughters, were ambushed by those from the enclave while traveling down a desert road. The infected individuals, such as Meda and Eli, took them back to their enclave where the majority of the text takes place. They expected Blake to be willing to come with them and help yet revealed no information about what it was needed for. No one from the enclave was willing to explain the circumstances because they knew they would try to escape. Blake and Meda have a conversation after she has infected him without his knowledge: “It’s a disease, she said. Have I been infected? She turned her head to look at him, smiled sadly. Oh yes” (Butler, 485). Meda continues, “She lifted his right arm, exposing the bloody scratches she had made” (Butler, 486). The deception used by Eli and the others is purposefully employed knowing well that after they revealed that Blake and the girls were infected, it would be too late for them to turn back. Those of the enclave infected a few to benefit what they viewed as the greater good. A trial such as this is to derive greatly desired data is seen to be yet again completely unethical; it leaves its participants with irreversible effects.

In the context of our course and the grand scheme of things, understanding the nature of informed consent is crucial for building a set of governing values and principles to guide us through life without doing harm. When we find ourselves in the positions of power that come inherently with the role of being an experimenter, it is of great importance to ensure that those involved are being treated properly. Care must be taken to make sure the experiment will at no point deprive participants of their humanity. The importance of viewing test subjects as human beings rather than variables in an experiment must be foremost in the mind of the researcher. If this perspective is compromised, harm is inevitable whether it comes as the result of carelessness or deliberate cruelty. There is very little difference between the two for someone who has been harmed as a result. 

Trust must not only be given, it must be rightfully placed and maintained. Without ensuring that consent is being provided from a place of understanding, abuses to human rights are bound to occur or be perceived to occur by those who have been experimented on. By entering a study, participants place a level of trust in whoever is conducting it. If that faith is abused, taken advantage of, or exploited against the best interest of the participant, trust can be lost along with consent. As Washington states, “Informed consent [is] revocable at any time during the course of treatment,” and the patient should leave with no long-lasting harm done to them if or when such consent is revoked (Washington, 232). Though a person may voluntarily submit themselves for experimentation, ethical research demands their ability to back out. Informed consent is procedural and sustained, not given once irrevocably.

Radioactive Oats, Anyone?

After my last blogpost, I found the question I pondered last time still lingering in my mind; how many other stories of exploitation are out there going without notice? In my journey to discover more under appreciated stories of those victimized by the medical field, I came across another intriguing excerpt in Medical Apartheid by Harriet A. Washington. This time, the story involves a group, not just an individual, being manipulated. Also, uniquely, the group is being undermined by professors. In this case, those victimized were a group of young orphaned boys.

During the 1940s and 1950s, Quaker Oats Company teamed up with Fernald State School to conduct radioactive experiments on the young boys the school housed (Boissoneault, 2017). The professors conducting the research gave the boys radioactive laced oatmeal and milk, specifically radioactive iron and calcium (Boissoneault, 2017). The boys at Fernald State School were also directly injected with radioactive calcium, as these experiments were conducted to see how the body absorbs and processes calcium and iron (Boissoneault, 2017).  At the time these experiments were occurring, Quaker was being backhandedly targeted for its products possibly inhibiting iron absorption due to the high level of phytate in the oats. Therefore, the company invested in the researchers conducting the radioactive experiments to prove the media’s claims invalid (Boissoneault, 2017). Quaker Oats Company provided the oatmeal that was then laced in the experiments (Boissoneault, 2017). As stated in Medical Apartheid by Harriet A. Washington, not only were these boys orphans, they were primarily African American, as revealed by video footage of the school’s housing (Washington 233).

It shakes me to my core to process this story, and I once again am questioning the world with how this is even possible. This story in Medical Apartheid baffles me and makes me want to dive deeper to uncover the details. How could researchers take advantage of such young boys that are without any form of parental representation? Those in charge of the experiments derived data that showed calcium enters the bloodstream and then quickly advances to the bones. They later claimed these results provided the foundation for osteoporosis research (Boissoneault, 2017). I wonder, was the advancement in medical knowledge worth the violation and exploitation of children? My animosity of this experimentation fuels my inquiry of the medical field and those who provide the data for advancement within it. When further looking into those who ran these studies on the orphan boys, I discovered the unimaginable; a research article was released for publication on these experiments in 1955 (NCBI).  Not only were these young orphans used as test subjects as they ate their breakfast, they were made into a publication. It appears the link between medical advancement and exploitation of human beings finds strength in not only unvoiced adults, but children as well.

The text we are continually revisiting in this course, Medical Apartheid, has brought this story of the Quaker Oats Company and Fernald State School to my attention. This book consistently raises awareness to these low-profile cases of those who are neglected through the medical field. I hope to repeatedly bring these stories to my readers’ attention so that they too continue to dig deep into uncharted paths. If we do not uproot these problematic tendencies of the medical world, who will? The lack of information available to us, the public, regarding these unvoiced stories is shocking and truthfully unacceptable. With these blogposts I hope to uncover even more stories like the one I have just discussed and provide them the voice their victims never had.